Letting Go

This programme contains some strong language.

'I'm Rosa Monckton.

'For the past decade I've been campaigning for people with disabilities.'

-This is a 10. It just depends on shape.

-Mummy!

'This is my daughter, Domenica, who has Down's Syndrome.'

-What sort of size are you? Quite small.

-Ten.

'She's about to turn 16.'

If you're taking me to the Queen!

'It's a milestone for any young person

'but if they have learning disabilities,

'they have even more challenges ahead.'

We're back on air!

I try to have fun, but it's not that fun.

For those who are more able, how independent can they really be?

-Are you good with money? Is it something you could do alone?

-No.

How do they find homes that are safe and secure?

Bad people.

It just scared him to death and that just finished Richard off.

And as a mother, is it ever really possible to let go?

It's that constant 24 hour worry, and it's terrifying.

What's going to happen to Jess?

-All right, take it out and put it in your hand.

-Mum!

It's not as easy as people think to just let go of your children.

Oh, Mum!

-"Solo, Domenica Lawson."

-Oh, solo.

-I know.

"Choreography, Domenica Lawson." Are you impressed?

I'm amazed.

CHEERING

Since she was a young girl, Domenica has had one great love in her life.

Dance.

Tonight, she's appearing on stage at her annual school show

and we've come to support her.

She's the only performer with a learning disability on the stage

and she's just about keeping in step.

Like any parent, I'm always proud to see my daughter on the stage.

She loves to dance but I do remember

shortly after she was born

being told she may never walk or even sit up.

You were so good, darling. Were you talking to yourself?

-Were you telling yourself what to do?

-I was kind of nervous.

But you were good. You didn't look nervous. It was fantastic.

Thank you, Mummy.

'For Domenica it's a rare pleasure to appear as an equal

'with other young people of her age.'

Here, doggy.

My stage name - Mega Awesome.

I really can hardly believe that Domenica is about to be 16.

On the surface, she seems to be very like her peers,

but from now on her life is going to be very, very different

and as her mother, I know how very vulnerable she is.

We have to plan ahead for when we're dead.

And now is the time I have to seriously start thinking

about her future.

About where she goes, where she ends up and what she does

and how to protect her.

'It fills me with fear of the future.

'It's a very difficult moment.'

Welcome to our village. Our shop.

Our school. Our pub.

This is 17-year-old Jack.

Like Domenica, he has Down's Syndrome

and has lived most of his life in a tiny community.

I've lived here for ages.

I try to have fun, but it's not that fun.

It's always been this way.

Done!

This place, I don't know, it's really boring.

Boring right now. That's how I feel in my life.

'I've come to Devon to meet Jack and his parents, Ronny and Rod,

'to see how they're preparing for Jack's future.'

-I'm Rod.

-Hi Rod, Rosa. Very nice to meet you.

-Nice to meet you too.

Oh, nice and warm in here.

'Jack's got two sisters

'who are already leading normal teenage lives.'

Good morning, everyone.

Jack, do you want to come and meet Rosa?

-Slobbery kiss, Rosa.

-Hello, Rosa.

-Hi Jack. Very nice to meet you.

-Yes, very nice to meet you.

-How was school?

-Yes, really amazing.

Good. So, once you've left school and taken all your exams,

what do you want to be and where do you want to live?

-I want to live in Las Vegas.

-Las Vegas!

-Yeah.

Why do you want to go there?

It's just, erm...

I'm not sure. It's a great place.

And I would have like great jobs in Las Vegas

like being a writer, lawyer, photographer.

Yeah, I just want to be famous. That's what I want to be.

Jack, why do you want to be famous?

I just want to be. I just want my dreams to come true.

Live in Las Vegas and then be famous.

He's just now very aware of his condition

but he wants to be just like everybody else.

The people of his age are all talking about boyfriends,

girlfriends, going out clubbing,

having a great time, you know, all the normal things.

But he does not... he can't join in.

And one of the difficulties with Jack is his ambitions,

so what we're trying to achieve at the moment,

is working out which way he should go in the future.

What does that involve?

Well, finding Jack a job

that will really suit him and make him happy.

Not something because they've had to fit in.

So realistically, what would that be?

Erm, something that Jack is capable of doing,

so he loves his photography so, practically,

if he had dedicated teachers, he could learn to do photography.

-I know you're saying realistically...

-Let's be realistic.

Will Jack take the photos that appear on the front of The Times?

I mean, I can't see anybody paying him

to do what he really, really wants to do, you know.

How do you know?

I don't but I'm just saying, realistically.

I never say never.

If we don't have those ambitions for our children,

then no-one else is going to.

Yes, I got it in!

'Ronny is like every mother of a disabled child. She wants the absolute best for him.

'She'll fight tooth and nail until her dying day to give him

'as independent a life as it's possible for him to have.'

-Thank you.

-Bye. Have a safe journey.

-Yes, I will. Bye-bye.

One of the things that you have to do as a parent

is to work out exactly WHAT they are capable of.

-That's it!

-And how much can we plan for them

within the limitations of what's possible?

Domenica's leaving school with barely any qualifications.

What's happened to your thing?

'And I'm wondering what kind of work it's realistic for her to do.'

Have you got your lip salve?

It's upstairs.

Run and get it and let see if I can find another cardigan, that's too small.

'For Domenica's work experience,

'I've arranged for her to spend a week

'at a hotel close to our home,

'staffed by people with learning disabilities.'

Are you still off to see the wizard? Good morning.

Domenica has come here to learn how to work in a hotel.

How to wait at tables. How to wash up.

How to clear away and how to be part of a team.

Apart from anything else, what it will teach her is life skills.

-Have you got a question?

-Yeah.

-Go on, then.

Er, in the restaurant, what do you do if you serve them?

When you serve them?

I don't want to show her her limitations.

I think that's the wrong way of looking at it,

but to manage her expectations.

Hello, ma'am. What are you going to have?

Say - "Are you ready to order?"

Ready to order.

Yes, I'll have the...

Prawn cocktail.

-OK.

-If you're struggling with what to write, I'll help you.

Thank you. I can't.

Less than one in five people with learning disabilities

manage to get a job, and most of those are part-time or unpaid.

-Can you come here?

-Yes, I'm right here with you.

-Come here.

-Yeah, I'm coming.

For Domenica, it's a real challenge

to even think of serving as a waitress.

-Stand that side.

-Are you ready to order?

Say, "What would you like?"

What would you like?

-I think I'll have the lasagne.

-The prawn cocktail, please.

-Here.

-Lovely, thank you very much.

No, Domenica. Sorry. The lady in the window. That's it.

Here.

I know that all she wants to do is be a star on the West End stage.

For her, and it's wonderful, the sky is the limit.

She thinks she's capable of doing absolutely anything at all,

and I love that part of her

but equally I don't want her to become a disappointed adult.

-Where put it?

-On the table. Very, very carefully.

And if we can give her some basic skills,

who knows, down the line she may be able to use them.

And perhaps getting a job in a cafe or in a restaurant,

and to give her some sense of self-worth, you know,

to get out of bed and feel she's being a useful member of society.

-I did it!

-Well done. See, you can do it.

I can't believe it. High five.

I know that it has to be done.

I know that I have to let my daughter go and be independent

but it makes me very fearful, very fearful.

You have to keep going because it has to be the right thing

for the child, to cut the umbilical cord.

But I just wish that there was more out there to protect them.

As a campaigner, I hear all too often of the difficulties

young people face when they attempt to move out of the family home.

-I'll be your lackey.

-Yes!

Richard has Down's Syndrome.

Concentrate on your breakfast. I don't like my sausages burnt.

He is now back living with his parents

after an attempt at living on his own went badly wrong.

He's very artistic. That's his breakfast.

Six years ago, Richard moved in to a flat on his own,

rented privately by his mother, Dawn.

In the daytime he went to an activity centre,

in the evenings and overnight, he was supported by carers provided by the local authority.

In total, Richard had 16 hours of support every day.

He was really excited, really excited.

Couldn't contain him, really.

He was just wanting to get there. He thought it was absolutely fantastic

to have his own key, move into his own flat.

-Have his own space.

-Yes.

The flat is just a few minutes' walk from the family home.

-It was like the moving on.

-Yes.

The next steps. But the next steps didn't work.

Almost straight away, things started to go wrong,

and Richard soon had problems with his new neighbours.

So, here we are at the flat

and the one just over there was Richard's flat.

-That one.

-Which one? To the left of the door?

With the pipe going up.

This is what we thought was Richard's lifetime home

and it turned out not to be.

And it just brings back a lot of anger.

The upset, the stress we had,

it just brings a whole lot of bad memories.

You wanted to live there on your own, didn't you?

-Yes.

-And then what went wrong?

The bad people.

They're silly.

They were silly.

Naughty.

Did they swear at you?

-Yeah.

-Use the F word?

Yeah.

And what else did they do?

Er...

Come in.

-They knocked your door, didn't they?

-Yeah.

Perhaps shouted at you through your door.

Yes, they did.

Did they come when the supporters were there

-or did they come when you were on your own?

-On my own.

-When you were on your own.

-Yeah.

And you can't express yourself, can you, Richard?

You have a job, if people upset you, you get very upset, don't you?

-Yeah.

-You get very upset, where, I suppose,

you and I'd perhaps have it out and sort it out.

And he was very upset and he started pulling post out of their post box,

-didn't you, and hiding it?

-Yes.

On one occasion he wrote his name in felt tip on their front door.

It just didn't work, no.

And, the tipping point was the last weekend, which was at the flat.

-Yep.

-He had abusive phone calls.

His electricity was switched on and off several times throughout the evening.

He had someone spit on his front door

and it just scared him to death.

-Mm.

-And that just finished Richard off.

-Is it a bad memory for you?

-Yes.

It is.

Look at you. Completely obsessed with Dr Who.

Exterminate!

'Richard clearly struggled living on his own, even with lots of support.'

Yeah, bye.

'Dawn has to start planning all over again for his future.'

I know I've got to think about it but it's not something I relish.

Not something we're looking forward to.

-But actually you have to.

-I have to.

It's very hard cos I do worry what will happen.

Particularly after the experience you've had,

-you had a big package of care, and still it didn't work.

-It still failed.

And do you think you'd go and live on your own again?

Er...

-No.

-No. No.

There was one older carer who said to me once, she said,

in some ways I hope my son dies before me

because then I know everything will be all right.

I've heard that many times, too.

Because, you know, I dread what could happen to him.

I want to stay here.

You'll stay here, yeah.

-Thank you very much.

-Erm, yes.

'They had all the care in place.

'As much as is possible, a huge care package,

'but there are so many people out there'

who don't actually want people like Richard or Domenica

living next to them out in the community.

-OK.

-Bye. See ya.

-Bye.

Imagine if Richard had been in that flat in 20 years' time

and then there's no Dawn around.

Who would have looked after him? Who would have picked up the pieces?

Where would he have gone? No home to go back to.

You know, it is the recurring nightmare

for parents with children with learning disabilities.

And as soon as this is finished, you're on.

Go on. Go for it.

This is Jack live, radio station at Soundart FM.

-Here we are.

-Brilliant.

In Devon, Jack's got a placement at a community radio station,

organised by his mother, Ronny.

So, what's your first track?

My first track's Michael Jackson, She's Out Of My Life.

There you go. Now you take it easy for three minutes!

'Round the corner from Jack's house is a place where he could live

'when Ronny feels he's ready to leave home.'

This is the start of it. You see that's quite...

Both sides of the road?

No, just one side. You just live in the village.

It's a community for young adults with learning disabilities,

even though it's just five minutes from her home,

Ronny has not yet had a proper look inside.

-Thank you very much. And how many of you live in here?

-Er, four of us.

Four of you, yes. Hello. Hello. I'm Rosa, who are you?

-Yvette.

-Hello, Yvette. How are you?

-OK.

-And do you live in this house as well?

-Yeah.

-And do you like living here?

-No!

-No?!

It's OK really, here.

Good, I'm pleased to hear that.

-I like my red wine.

-Oh, do you?

-Will you invite me to the next party you have here, please?

-Yes.

Thank you very much.

'It costs £800 a week to stay here,

'with places funded by local authorities.'

So at the weekends and on Wednesday evenings

and Saturday mornings, there's cleaning jobs.

Hannah is one of 12 young adults living here.

She's one of the more able residents,

but the community accepts anyone without a major physical disability.

I'd love you see your bedroom. Yeah?

-It might be a bit messy.

-It's not messy at all.

-This is really nice. Isn't it lovely?

-Yes. Good.

-Lovely colour.

Very good. Can we see the kitchen?

-Love to see that.

-Oh, this is nice, isn't it?

Yes, and this is all our jobs.

-Oh I see, that's a very good idea.

-That's brilliant.

So I'm doing the floor this evening.

And then I'm cooking on Wednesday night.

This is all our jobs we have to do, so it goes in a rota.

-Very well organised, isn't it?

-Yes.

-Are you living here?

-No, I'm a support worker. I come and go.

-I see.

-As we all do.

Is there somebody who lives in at night time?

-There's two sleep-ins, yes.

-Two sleep-ins.

-Yes.

It seems like walking into somebody's house.

-It's... yes, it's home.

-It's home.

-It's home.

-It's home, not a home.

-No.

-And that is a huge difference.

It's home.

Is there a chance that somebody could just stay here for ever?

You know, as we all get older, our needs change so, no.

You cannot say it's a home for life.

-Bye, Mikey.

-Bye!

-Nice to see you.

What a wonderful place. Fantastic atmosphere. Just like a home.

Rota of duties, like student digs,

and everybody we've met seems really happy and settled

and it's exactly the right sort of thing

for young people with learning disabilities.

-Thank you.

-That's all right.

-See you soon. Bye, Mikey.

-Bye!

I still can't believe you haven't contemplated

having Jack living here, further down the line.

I would love to but I'm trying to be very grown up about it.

But, maybe it's not right.

It seems to me that for Jack to be able to live so close to his parents

in such a safe community could be perfect.

'Of course I'd love to see Jack down the road,

'but I think I must look at the bigger picture for Jack

'first of all.'

It would be very easy for Jack to move within our community,

but I don't feel that that would be kind to Jack,

in letting him really fulfil his ambitions.

He's got a lot he wants to achieve,

because he's got a lot he wants to try.

There's career paths he wants to follow.

Yes, I got it in!

Come on, girls. Are you scared?

We've got to be incredibly brave by asserting ourselves

and finding somewhere that's possibly more independent.

We've got to help him to cater for what he wants to do.

'Like all mothers, Ronny's trying to strike a balance

'between allowing her son to follow his dreams,

'while being realistic about what's possible.'

It's something that I struggle with, too.

It's so difficult, you know, you don't want to impose,

you can't impose what you feel would be right for you,

on somebody who's not capable

of making those decisions for themselves.

So you just have to go with a gut instinct

and find somewhere that, as much as possible,

suits the personality of the person.

< Train!

< Very good!

I've got to practice!

'I doubt that Domenica could ever have a career on the stage,

'but dance remains her passion. Much more than waiting on tables.'

I'm going to be 16 soon.

'Dominic and I have known for years about a dance and theatre school

'called Chicken Shed, in north London.'

Shake away those nerves. Shake away those nerves.

Off you go!

A third of the students on courses here have some kind of disability.

The rest are able-bodied.

If Domenica got a place here, she'd be doing what she loves,

as an equal alongside other people her age.

It's fantastic to see her so completely included.

That's the key.

That's what we need, one more. Would you be able to stand on one foot?

And then Sarah, you hold her - I mean Jodie, you hold her hand.

That's it. That's it. So that's five feet.

-Freeze!

->

'To get a place here, Domenica first has to get through an interview.'

Remember all that we said.

'Thankfully, what they look for is passion for the performing arts,

'rather than just academic qualifications.'

I would just love to be a fly on the wall.

It's the very first time she's had an interview on her own and she went through with such confidence.

I mean, this is Domenica's first tentative step into adult life.

'Half an hour later, and she's out, brimming with enthusiasm.'

-So do you think you would like it here, darling?

-Yes.

-What was good about it?

-The dancing!

-The dancing! Did you enjoy being on the stage?

-Yes.

Why?

THEY LAUGH

Even if Domenica passes the interview,

it's not down to us whether she can go to Chicken Shed.

It is the local authority that decides what support she needs,

who should provide it and what they will pay for.

'I had no idea, and I'm sure parents don't,

'that you are not in a position to make those decisions for your child.

'You can fight - but ultimately, it is not my decision.'

The local authority has to agree

that this is the right place for her.

I have to prove to them that there is nowhere like this

in East Sussex that can give her the same curriculum.

It's a nightmare.

And as a parent, you feel completely disempowered,

and that makes me feel totally inadequate as a mother.

Jess Hiles lives in Redditch.

She has a genetic condition

which means she has both physical and learning disabilities.

Although she is 28, in many ways she will always be a child -

trusting, vulnerable, small in stature

and in need of constant care and protection from supportive adults.

With an eye to the future, her parents,

now approaching their 60s, have found a flat

where, for the last two years, she has lived on her own.

Government policy is to encourage independent living

for adults like Jess.

But does it actually work?

If you could decide where you could live, what would you choose to do?

Live here!

-You would choose to live here?

-This flat!

-So you really feel that this is your home?

-Yes.

Was it a very big step when you left home, to come here?

Yes.

Can you remember what it was like? What did you feel like

-when your parents left you here for the very first time?

-Scared.

Scared of what?

For the first time, live on my own.

And so what did you do?

Cried my eyes out.

Do you understand why your parents thought it was a good idea

for you to live here?

-Do you think they were looking ahead for when you're older?

-Yes.

-To build up your independence?

-Yeah.

Have you ever had any accidents living here on your own?

I had a toilet leak.

Well, that's annoying! And did you know what to do?

No.

-So what happened?

-Phoned my dad.

And how about the shopping for your food?

My dad.

And are you good with money, is that something you could do on your own?

No, carer...

-Dad, dad again.

-Yeah.

I like to see him coming in the mornings, see how I am.

Keep me going.

'There are many people with learning disabilities like Jess in Britain -

'too capable to accept life in an institution,

'but not capable enough to manage life alone without support.

'But who is actually providing that support?

'Her father, Barnaby, lives nearby.

'He calls in every morning before work

'to get Jess ready for the day ahead.'

Hey, Jess. How are you doing? Did you sleep all right?

Yes, you?

Yeah, yeah. I overslept a bit this morning.

-So you slept OK?

-Yes.

Fantastic.

-Can I wash your hair?

-Yes.

Like so many parents, it's clear that Barnaby

is prepared to do anything to support his daughter.

I love your taps, Jess, they're so easy to use.

-Is that cold?

-No.

HE CHUCKLES

-Shall we do just the one today or do you want two?

-No.

Just the one. OK, that's splendid.

Barnaby, do you come round every morning to do this?

Yes. Yes, I do, yeah.

I don't wash her hair every morning, but pretty much every morning.

I look for the shine and see if it needs it and it's fine today.

-And that's something that Jess couldn't do on her own?

-No.

She can get her arms up here, but she can't keep them there.

You're quite happy to have baths by yourself, aren't you, Jess,

but it's things like hair washing, and certainly the nails,

shaving under her arms, that kind of thing

that you can't do, can you, Jess?

No.

It looks great.

Thank you! I've had lots of practice.

Don't forget to turn the light off, Dad.

Well, you were last in, Jess!

Jess also suffers from a foot deformity,

which means she has to have special shoes and splints.

Eventually, she'll have to use a wheelchair.

Jess needs help with all the many little things

that most adults take for granted.

That was well in.

Here, some bread.

'She has no problem making friends and socialising with people.

'She doesn't seem to get lonely.'

But were she completely independent, were there no support whatsoever,

the flat would become unliveable-in.

She wouldn't clean it.

She would probably fall back on a convenience diet

that would be really bad for her.

Her personal hygiene would probably deteriorate.

And it's that kind of bedrock of support

to keep her living safely that she could not live without.

During the day, while Barnaby is at work,

Jess goes to a Garden Centre for work experience.

It's a charity set up to help people with learning disabilities.

She comes here two days a week.

When Jess comes to us, she is, if you like, not being looked after,

but she's in a safe environment.

And she's got people who understand Jess's needs, if you like.

And I think if they had that more days per week,

it would be a great help to her.

-I think we are mum and dad to a lot of people here.

-I'm sure you are!

What we're going to do today is cut the pieces of green about this long,

put them into a little pile, then we can wire them into the wreath.

Organising this placement has been difficult -

initially the council presumed Jess was being paid,

so for a while, they stopped her income support

and she faced eviction from her flat.

Thank you, Jess.

But Jess is not paid, and a place here is expensive.

Jess has to pay the centre £50 a day.

And Jess, do you feel a sense of achievement when you finish one?

-Yeah.

-I bet you do.

That is great.

LAUGHTER

Jess' parents are amicably separated,

and they share Jess' support.

Although her mother Jo lives an hour's drive away,

she is constantly on hand to help with everyday things

like cleaning, shopping, and Jess' many medical appointments.

It's time-consuming, and Jo has found it hard to keep a job

while also looking after Jess.

But she felt she never had any choice.

I do get asked a lot.

It's the guilt, "Why aren't you living with your daughter?

"Why isn't she living near you?"

'And it's when I say I'm not going to be there, I can't choose.

'Jess wants to live independently, and why shouldn't she?'

This really isn't independent living

if both of you are involved to the extent that you are, is it?

No.

And it doesn't work?

No.

No, and certainly not without us at the moment.

And what are her existing care provisions?

She currently gets seven hours' support a week.

Five of those are provided for,

funded by something called Supporting People.

And two she buys herself, from her benefits.

Now, our big problem is that the rules and the parameters are

that those Supporting People hours

don't involve any kind of personal care at all.

And within those five hours of non-personal care,

if something needs doing, Jess is expected to ask for it to be done.

And often, Jess just doesn't know how to.

I think Supporting People is probably fine for the people

for whom it's been invented,

but then it's been applied to an extra tranche of people,

for whom it's completely useless.

That's why we are challenging authorities about it.

She's not catered for with the right support and care -

it's never been there.

Do you get on with your carers?

Some of them, and some not.

-You've had problems with your eyes too, haven't you?

-I had cataracts.

-So that's why your father at the moment is putting in drops?

-Yes.

Would your carers do that?

-And you can't do that?

-No.

What would be the ideal solution for you with Jess?

In an ideal world, what would be lovely is for sheltered accommodation

to be made available for people with learning disabilities

so they can have their own flat, but also the communal room,

and someone on call, but also have their care if they should so want.

-But there isn't anywhere.

-Nowhere round here?

Nowhere round here. The funding isn't there.

-Have you done one of Jo?

-No.

-Come on.

That's brilliant, Jess!

When Jess moved into the flat two years ago,

Jo and Barnaby believed that they could get sufficient care

not to have to be on call around the clock.

What else do you say at Christmas?

But it seems the right outside support and care

that independent living requires only comes

when there is a clear medical diagnosis,

and Jess doesn't have one.

Brilliant. Absolutely brilliant. I love that.

We'd been through lots of tests, we didn't know whether she had a syndrome or not,

it was thought she might have Williams Syndrome.

But she failed the last little test,

and that would make life an awful lot easier, if she had a label.

That's when the nightmare began.

And not having a diagnosis makes it difficult

to access the support that you need, I presume.

Absolutely.

Because she hasn't got a label, she has never had a care package.

Which is just the thing we so desperately need for Jess.

Jess has had tests which show a 98% match for Williams syndrome,

but apparently this cannot be conclusively diagnosed.

It's a rare genetic disorder,

with symptoms that closely match Jess's - physical abnormalities,

heart problems, learning disabilities

and an overly trusting nature.

Barnaby and Jo are deeply frustrated by their inability

to get a consistent, confirmed diagnosis

and the care that would go with it.

We have yet another assessment

and then the goal posts move, and we have yet another assessment.

We also had a recent telephone call which I'm so glad Barnaby answered,

saying about yet another medical assessment,

and Barnaby said, "Will this just be the one-off?"

They said, "No, we'll have to do it quite often

"to see if Jess ever gets better."

But she isn't going to get better.

As both she and her parents grow older,

she's probably going to get worse.

It's that constant, 24-hour worry...

what if I drop dead tomorrow, Barnaby isn't around,

what's going to happen to Jess?

And there have been times where...

There's been a couple of times recently and in the past

where I've wanted to crawl into that corner, go to sleep and not wake up.

I'm tired. I just don't want to carry on much longer, but I will.

She's Jess, and I've got to be there for her,

but I'm not going to be there forever.

How are we going to start, Jess?

Yup, yup.

Go on then, you look!

OK, check.

That looks good, that looks good.

You've told me what the good things are about living here on your own.

What are the bad things?

Nothing.

None at all. You're never, ever lonely?

Got my teddies!

How long have you had Cuddles?

Six... Six and a half years. I think.

Yes.

Could you manage to live here without your parents?

Hard.

That would feel...hard.

'Jess is not living independently.'

Chronologically, she may be 28,

but mentally, she's still clearly a child.

And I do not understand the lack of a care package.

And it just doesn't seem at all right or fair,

and both parents seem to be under an enormous amount of stress.

And it's very easy to understand why.

Yes, we are all the same, yes, we are all equal,

but some of us are more vulnerable than others, and need more care

and more looking after, and someone like Jess - absolutely,

and my daughter - fits into that category.

And we're not, as a society, doing what we should.

And if you judge a society

by the way it looks after its most vulnerable,

then we're really, truly lacking.

It's Domenica's big day. She's turning 16.

THEY SING "Happy Birthday"

She doesn't realise how her life is going to change

in the years to come,

but she's beginning to take her very first steps towards adulthood.

There's no easy way for any of these young people

to lead independent lives.

Make a big wish now.

Ultimately letting go means taking risks

and putting your trust in others to keep your child safe,

and that's what makes it all the more difficult.

Can I say, erm, thanks for coming.

-Aw!

->

Well, that's it.

LAUGHTER

'The fact that she's 16 makes me look ahead.'

I have to confront my own mortality

and the fact that I'm not going to be there to look after her,

'and really, she's always going to be a child

'and always have the requirements of a child,

'and as a mother, you want to be there for your child,'

and I'm not going to be.

Thank you, Mummy.

OK!

-Is there anything you want to ask me at all?

-No.

-All right. Take it out and put it in your hand.

-Mum!

-Do you want to tell me what you're going to do?

-Mum!

-The bus will be here in a minute.

-Yes, I know!

Don't forget to ring me!

Ah...

Three months on, and Jack's making his first trip on a bus on his own.

While his mother Dawn decides what to do next,

Richard is still at home.

Jess's parents are still fighting

to get official acceptance of her condition,

which they believe will unlock the sort of care

that will secure her future.

And Domenica's just got an important letter.

-Oh, it's Chicken Shed!

-Wow!

What it says...

Do you know what that means? "We are delighted."

Why are they delighted? To offer you a place.

-So does that mean I'm in?

-That means you're in.

-Yay!

-That means you're in!

-Mummy! I'm gonna be at Chicken Shed!

-That is amazing, darling!

-Oh, Mummy!

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